Talk to me about BM..

[Foxesden1]

My daughter was just diagnosed with Celiac, Blood Sugar issues, and Crohns. Our GI has not been very helpful/supportive with what type of diet to feed her, so I feel like I am a tad bit lost.

I know she is unable to tolerate *Gluten, Dairy, Corn Protein, Soy, Fruit and Sugar.

Because she is Reactive Hypoglycemic, she has to eat every two hours, and have corn starch (raw) five times a day.

I boil EVERYTHING like my Grandmother - and we feed her no raw salads etc.

I am scared of feeding her veggies, and Fatty meats/chicken skin.

Right now, she is having 4 or 5 BM a day, green in color (moss) most a type 4, sometimes a 2/3 combo.

She is keeping her weight, not vomiting.

Is that okay? Is it to many? Is it because she is having to eat so much to keep her blood sugars stable?

Thank you so much for your help!

T

 

[my little penguin]

what type of meds is she on and for how long?
where is her disease located?
what did her scope/imaging show?

Diet is very individual and what works for some may not work for others.
the number of BM's is also individual.
IF she was just dx and just started treatment then it takes time to get to remission and I mean months to a year especially at first.

For Ds we found diet other than EEN has little effect on his IBD.

 

[Jim (POPS)]

Hi and welcome to the forum. I'm sorry that you and your child are going through all of this.

When we first find out that we/your child have crohns we want to find out, right away, how to make thing better. That isn't always what happens. I don't want to scare you, I'm just wanting you to take a step back and chill. 4-5 BM a day is not all that bad, I've had 15 or more a day for a long time sometimes. The thing to do is keep pushing the Dr's to help you. For each person it is different. Im regards to food, what ever she can eat that doesn't bother her will be ok. Sometime it helps me when I eat rice, toast with just a bit of butter, mashed potatos/baked potatos, fish (baked) I don't eat red meat when I'm not feeling well. There is no one anwser for the type of food your child can eat. You need to keep a fod log. That will help you.
I wish you guys the best. Keep coming to this forum and you will get the support that you ned.

 

[Foxesden1]

1000 mgs of Pentasa a day.

She has ulcers in her tummy and its in her Jejunum I think?

 

[Foxesden1]

oh wait, something with a I? OMG I have no idea... its all a haze.. I will ask when I go back on the 17th.

 

[my little penguin]

DO yourself a favor- ask for a copy of all blood test, imaging reports and scope reports
It will help you for later.
more than likely it was her ileum ( ileitis ) that was affected.
PEntasa is a very mild drug.
most GI state it is like giving aspirin for brain cancer.
not going to hurt but not going to help crohn's much either.

If she isn't better after a month on pentasa ask the GI for
help to try something else.
http://www.sickkids.ca/IBDacademy/IBD-Mobile-App/

here is an app to trackthings it helps

you can find it on iTunes for apple stuff or android.

basics on crohns'

http://www.hopkins-gi.org/GDL_Disea...DL_DC_ID=D03119D7-57A3-4890-A717-CF1E7426C8BA


study it- it will soon be your friend( ok probably not )

here is a link on EEN most have had great success with it-
ask your GI
it helps short term but not a long term soln
http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf

she would still need maintenance
meds

 

[Foxesden1]

yes thats it! thank you so much!

 

[Mehita]

Welcome to the forum, Foxesden1... I'm sorry to hear about your daughter's diagnoses, but you are definitely in the right place for support and advice. How old is your daughter?

My son was diagnosed with Celiac and Crohns four years ago and the best advice I can give you regarding food is to meet with a dietician, especially with the other food issues your daughter has. It's going to be a lot of trial and error initially, especially with the gluten free, but it will get easier. I second MLP's suggestion to track everything for awhile. We used an app called My Fitness Pal that was easy to use and mobile. It's hard to keep track of everything in your head, especially right now, so these apps help a lot and if she has trigger foods you'll see a pattern.

I will tell you now, the hardest part of having Celiac AND Crohns is deciphering symptoms to know if you're dealing with a gluten exposure or a Crohns flare up. The only way to really know is to be absolutely certain she isn't getting any gluten at all, ever. Skip restaurants for awhile, skip the "made in a facility that also processes wheat" products... skip anything that you're not sure about. You can't control when and where Crohns happens, but you can control the Celiac.

Four to five BM's doesn't sound too alarming to me. My son is in remission right now and still goes two to three times a day. As for the green color, it very well could be due to her diet, maybe an infection, or even bile passing through. I'm guessing its her diet. Just keep track and report any changes to your GI. Side note: you may see little white specs in her BM's and its just the Pentasa. Don't panic.

Last, breathe. It's overwhelming, but you have a dx and now you can help your daughter get better. It may take some time, but there are good drs, meds and therapies out there.

 

[CarolinAlaska]

Thinking of you as you enter this new and difficult world of IBD diagnosis. You've come to the right place. I wish you and your daughter didn't have to face this. I'm glad you have a diagnosis so you can start moving forward. We're here if you need to vent, ask questions, laugh, cry...

 

[Jmrogers4]

Yes agree with copies of everything, it is a lot to take in and hard to remember everything. I also make a list of questions to take to doctors appts. because I know I will forget something.
You will find the things that set her off but it is a bit of trial and error and even then it can depend on how she is doing. Even if she can't eat a lot of veggies right now that can change as she feels better and you find the right meds my son can eat pretty much anything at this point but it has taken us a long time to get there.

 

[Foxesden1]

We were told no raw baggies, salads, fried or fatty foods.